My name is Farhaana and I live in London. Here is the story that changed my life and made me who I am today. When I was 15 studying for my GCSE’s, I would get really bad back pain but I always put it down to sitting too long during exams and bad posture. There would be days where I just couldn’t get out of bed and times where I would cry in pain. I had numerous local GP appointments and A&E visits where they told me I simply had a muscle spasm and would send me away with small doses of pain killers. I soon learned to live with the pain and began attending college.
It wasn’t until my second year of college that I was scheduled to have my last appointment with my paediatrician. This appointment was for something completely unrelated and he was about to discharge me. My mum leaned in towards me and asked “Shall I asked him to check your back?” I shrugged her off and told her I was sure it’s nothing. I now thank God that in that moment in time my mum insisted and told the doctor to check my back as I had been having severe pain for a few years. He began to examine me, feeling my spine and frantically asking questions. I remember sensing panic fill the room as he asked “How long have you had this for?!” “How bad is the pain?!”
He proceeded to call two more doctors into the room and they all seemed shocked as they examined my back. At this point my mum and I had no idea what was going on but we looked on in anticipation as he told me to sit back down. He then said I needed an emergency X-ray that same day and made a call to a different department. “I have a girl here who seems to have developed scoliosis...” Scoliosis? I mouthed it to my mum. I had no idea what that word was. I still didn’t understand what was going on, neither did I know the severity of the situation or how my life would change from that day. I had the X-ray that day and then referred onto an emergency MRI all on the same day. I can remember numerous doctors, radiologists and technologists all giving me that same worrisome look, telling me this was unusual for my age.
I went home that day and researched “scoliosis”. Curvature of the spine. I remember reading something like only 3% of cases require surgery and this put me at ease thinking I would only need some physio because it can’t be that severe!
First time walking after op
A month later I was booked in with a spinal specialist at the same hospital where I saw the paediatrician. This was when I first saw my X-rays. He told me that there were two types of scoliosis: indigenous (happens as you grow or after an accident) and congenital (present at birth). The doctor diagnosed me with lumbar scoliosis but further investigation would be needed to determine the cause. He then examined me and within 30 seconds he told me that a brace would not do anything and I would need surgery. My heart sank. I was so shocked, I didn’t think my scoliosis could be that bad. I was referred further to the Royal National Orthopaedic Hospital.
A few months passed and I waited anxiously for my appointment at RNOH. The day finally came and I went with the support of my family. After more tests I was called into the surgeons office. He confirmed that I would need surgery and that my case was slightly different from what they had seen. I had congenital lumbar scoliosis due to one of my vertebrae being triangular at birth, meaning I was destined to bend as I grew. My curvature was at 48degrees and getting worse fast. He told me that if I didn’t do anything, every year my scoliosis would progress 2 degrees until it put too much pressure on my spinal cord and I wouldn’t be able to walk. If I went ahead with the surgery, there would be risk that my spinal cord could be damaged and I would be paralysed and in a wheelchair for the rest of my life. A lot for a 17-year-old to take in - I broke down in tears in front of my family and the doctor and was given 6 months to think about what I wanted to do.
The support from my family was amazing. They were there for me through all of the tears and worries and we all sat and spoke about what the best thing would be to do. I decided it would be best to go ahead with the surgery whilst I was young and I would take a gap year after my A-Levels to recover.
My college were also really good at supporting me. They set up regular sessions with the school counsellor for me and gave me a special ergonomic chair for classes and exams and also extra time for rest breaks during exams.
Once I told my surgeon that I would go ahead with surgery, I waited and waited to get my date for my operation. I completed my exams in the meantime and applied to university on deferred entry, securing a place at my first choice. Everything was in place for my surgery.
September 27th 2011. The date was set.
Spine before and after
The hardest thing about waiting for this date was seeing the rest of my friends go off to university and not really knowing how to prepare for surgery. I just didn’t know what to expect. My pre op was set for a few weeks before and I was told what the surgery would consist of and how this was going to be done. I’d been doing a lot of research in my spare time and even found a video of the surgery on YouTube (I would not recommend watching this though!) so I felt as prepared as I could.
The day finally came round and I had packed my bag ready for my hospital stay. My family stayed by my side. My brother and sister doing everything in their will to keep a smile on my face before I was going to go in. I had to take blood in case I lost some during surgery and I went in for another X-ray. I was taken to my bed which would become my home for the next week and a half. The surgeon and his assistant came round with some of the papers that detailed the surgery and it’s risks. As I had turned 18, it was up to me to sign this and give my consent for this life changing surgery. The surgeons explained again I would be having anterior spinal fusion surgery - fused from L1-L3 and bone graft would be used from my rib. One of the nurses really put me at ease and told me that the surgeon was one of the best in the world and he is really good and could do this with his eyes closed! That night I don’t think I slept though, I was really nervous.
I woke up in the morning. Changed into a gown and put my circulation socks on. I was then taken down to theatre where my mum came in with me. The anaesthetist and nurse really calmed me down and gave me anti sickness medicine and fitted me with an IV. They told me to think of something happy to calm my nerves. I held my mums hand and thought of being on the beach in Mauritius (where my parents are from) and I was put to sleep.
I was woken up by two nurses and told that I was in the waking up room. I couldn’t believe after everything I had been through and all those emotions that surgery was done. I felt like I had been asleep for two seconds. I felt very tired and my middle felt like stone, but I didn’t feel any pain. The first thing I asked was to see my family. I was taken to ICU and my family walked in. I had a chest pump fitted into my side to remove any liquid and an oxygen mask on to help me breathe.
If you’ve never been on morphine before one thing you should know is that it makes you feel like you are in a dream and you end up saying so many random things! I kept telling everyone they were my favourite and I was telling the nurses about my favourite mum, favourite dad, favourite brother and favourite sister!
The hospital took great care of me. I had amazing nurses who checked up on me, physio therapists and occupational therapists who helped me back on my feet. I spent a week and a half in hospital learning to walk again, being fitting for my back brace and revising the do’s and don’ts of recovery. I had pain from time to time and this was kept under control by medication. There was alotttt of medication for various things!
Rocking the back brace fashion in Mauritius
Coming home was difficult. Getting used to getting in the bath, getting in and out of bed properly and doing things I normally did like sitting down to watch tv with a new posture took time. The back brace I had to wear for 23 hours a day was uncomfortable at times I also had no appetite and couldn’t stomach much. I became bored at home, confined to the four walls of my room. My friends came to visit which was nice but it was hard not being able to do much on my own.
Recovery was slow and I became depressed at times when I thought about how I could have been at university. I hit rock bottom when the academic term kicked in and all my friends went back to uni and my parents had to go back to work. It was a difficult and lonely time. I had lost a stone and a half in weight. Four months passed and I got a surprise from my parents. They had booked a ticket for me to visit my family in Mauritius for two weeks to lift my spirits. Fresh fruit, a tropical island and my loving family I was so excited!
The flight was 12 hours long and I was advised to make sure that I walked frequently and drink lots of fluids. Mauritius saved me. It will forever have a special place in my heart for so many reasons. The change of scene, fresh food and love of my family really changed my mindset and my appetite was back! I felt positive and my muscles were relaxed. I wasn’t allowed to swim but I went to the beach, visited animal parks, went on short walks and spent time enjoying the calm atmosphere. The only difficult thing was wearing the hard brace in the 30 degree heat, so I switched to the soft brace I was provided with during the day and wore the hard one at night.
I came back to London two weeks later refreshed and welcomed with snow and -3 degree weather! But I was a changed person. I was positive and uplifted and was becoming more and more independent each day.
I started uni that year and by the grace of God I progressed over the three years to graduate with a First Class Honours. I went on to graduate again the following year with an outstanding teaching degree. And now I have been a qualified secondary school teacher for two years. The amount of young students who have also had spinal fusion or are suffering with scoliosis is surprising and I am so grateful that I can be a point of call and support for them!
I also became more active gradually under the supervision of my physiotherapist and began Pilates classes and the Zumba classes with my sister and gym buddy. I find that staying active really helps. I now go to the gym 4 times a week and I can jump, dance, skip and lift!
Last year after experiencing pain in my neck and shoulder, I was diagnosed again with cervical lordosis in my neck. This is now being monitored and although I feel pain after hardworking days, I am so much more positive knowing that my physio cares for me and staying active really helps. A positive mindset is key!
I also met a guy in my second year of uni. A very special one. One who understands my condition and my difficulties. One who always carries my bag, gives me massages and cares for me deeply. A true gentleman! To my surprise, he proposed to me earlier this year and we are now planning our wedding in Mauritius!
And finally, this is the picture that shows me there was light at the end of my tunnel! I believe that God will never give a person a burden bigger than one can handle and it all happens for a reason. Hardships make a person stronger and I am so grateful I found my happy ending and a new journey xx
It’s been almost 7 years since my operation and if there’s one thing I have learned it is that every cloud definitely has a silver lining! Although I am still restricted by some things (I can’t fully turn to my left and I can’t touch my toes!) I am happy to have overcome such a difficult time. It has made me strong. I have met so many amazing people online with similar stories and it’s built one big scoliosis family, which I am so proud to be a part of!
Thank you for letting me share my story, I know my scoliosis story isn’t the most severe one and there are much worse out there , but it is my story and if it can bring calm and support to even one person I will be happy!
Remember we are bent not broken xxxx
Thanks for sharing your story, Farhaana! It is so inspiring to read your story and learn about your life after surgery. You're positive attitude is a reminder that we're bent, not broken! :)
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To share your story, contact me through the contact page. All stories are encouraged...whether you are a scoliosis patient yourself or know someone with scoliosis, your story would be much appreciated!
Hi, I'm Kate.
A 16 year old SoCal-raised student, swimmer, and scoliosis patient with a love for Netflix, Pinterest, and Harry Potter.